do i really need meds???????????

[rory]

Hi, 32 yrs old male just diagnosed with temporal lobe epilepsy, never had a tonic clonic seizure. have simple partial, complex partial and absence seizures. it doesnt really interfere with my life much. ive gotten used to it over the years and can deal with it. my question is do i really need medication. im on 250mgx2 keppra a day which is going up to 750 twice a day over the next 4 weeks. im a bit spacey and tired on it already. i dont want to be on medication, i have a couple of friends with epilepsy and mine seems minor compared to theirs. i have another friend who thinks its stupid to take meds for it cause it hasnt really been a problem and ill get addicted to the meds(shes very non western medicine) i dont know what to think or do. i didnt question my neuro when he said he was putting me on meds for it, i was in shock from the diagnosis, which i was kinda expecting but i was still floored, this all happened on friday. my family arent taking it seriously at all but i dont know should they. im confused and kinda upset and my brain is fried cause of the keppra. any thoughts/help out there

 

[Nakamova]

Hi rory, welcome to CWE!

When deciding to medicate, ask yourself: Are the side effects worse than the seizures? Keep in mind that it's possible for uncontrolled seizures to progress in kind, duration, and frequency. If you decide to go med-free, it's something you need to be on the lookout for.

Keppra isn't addictive (though some other anti-seizure meds can be), so you needn't be worried about that. All the meds potentially have short- and long-term side effects. Sometimes those side effects go away after the body has had time to adjust, but unfortunately it's difficult to predict how any one individual will react to any given med.
I recommend that you discuss your concerns with your neurologist. Definitely let him know if you decide to come off of the Keppra, and go very slowly when you do so -- going too fast can provoke a seizure.

Best,
Nakamova

 

[epileric]

Welcome Rory

You probably should stay on your meds to try to control your seizures. They may be minor but you have to understand that the more seizures you have the more likely they are to get worse & more frequent. I was on keppra though & though it helps a lot of people, I"ve never had worse side-effects on any single AED.

When I was younger the doctors did whatever they could to stop my seizures, even at the expense of how well I functioned in daily life. That attitude has since changed so I think you should just tell your neurologist you'd like to find a medication with milder side-effects.

Meanwhile you might be interested in checking out neurofeedback. It doesn't use meds & if it help enough you might be able to ween yourself off of your meds

 

[lucycherish]

hi rory, i am also on keppra 2x500mg per day, built up from 2x250mg per day, i didnt question medication either as it was a huge shock at the time to be finally diagnosed with something, i would advise you to continue taking your medication, unless you can find an alternative to keep your epilepsy under control, what are your signs of epilepsy? i used to have arm and neck 'twitches' and my eyelids would 'flutter' those where classed as seizures, but after being undiagnosed with those for almost ten years it eventually led to a grand mal seizure, and then i was diagnosed 2years after that. When my consultant was giving me the options of medications to be on, he told me the necessary info about all of them and in with that info was that in the majority of cases keppra is an effective form of treatment that side effects may not be as harsh, yes i was exhausted and confused about everything for the first few weeks, but once i was on my set amount of meds (1000mg) it only took a few weeks and i was feeling back to myself, hope this is somewhat helpful to you x

 

[rory]

Hi thanks for the comments/help. i really dont know what to do. i do want to drive at some stage and i have to be a year seizure free before i can, as it stands im only about 4 hours seizure free, and i can imagine having an absence seizure whilst driving would probably be fatal. i suppose i should ride out the keppra till im on the right dose and settled on it and then see. im just confused and still in shock. the opinion is that loads of people dropped the ball with me because ive been having seizures since 14 and am only now diagnosed. epilepsy sucks, my mind is foggy and i have loads of collegework to do.

 

[DayDreamer]

This question sparked memory of remarks of mine that have been made repeatedly. I assumed that I am either one or the other: addicted or dependent on my aeds as I/we go through withdrawl seizures due to stopping and/or fogetting medications. I know it is not safe to discontinue these medications abruptly for anyone. The scariest events have been discontinuation of aeds for more than four or five days while in the hospital. This made me look up the difference of these definitions. I suppose even the word dependent needs the adjective physical in front of it. How many people majored in psychology?

I found this information from the national pain foundation 2005. I guess many people on prescription drugs are physically dependent. During this search it was stated that medical marijuana is feared due to addiction.

JL: What is the difference between physical dependence, tolerance, and addiction?

Dr. Schneider: There’s a huge difference. Physical dependence is a property of many different classes of drugs, not just drugs that can be abused. Physical dependence is a property of steroids, for example. What it means is that if a person stops that drug suddenly, there is a predictable physiologic response by the body.

For example, when you are physically dependent on exogenous steroids, meaning steroids that are outside the body in medication form like prednisone, your brain stops putting out chemicals that cause your body to release endogenous steroids, the steroids produced within your body. The pituitary gland normally puts out a hormone that stimulates the adrenal gland to produce epinephrine, which is adrenalin. When you’re on the steroid medication, the body stops producing it. What happens is, if you stop taking prednisone suddenly, your body is left without the endogenous steroids, the steroids your body usually produces. Clearly, the person has become physically dependent on the prescribed steroids and the solution to it, if they don’t need the medication any more is to taper it slowly so that the body gets a chance to reverse those changes. Opioids also can, and usually do, cause physical dependence. The body makes changes to adapt to the opioids and if you stop suddenly, you get this unpleasant withdrawal syndrome.

That’s what physical dependence is — it has nothing to do with addiction. Addiction is not necessarily a physical thing. Addiction is a psychological phenomenon consisting of three elements. One is loss of control, which means you intend to use only so much but when you have access you keep taking the substance. The second is continuation despite significant adverse consequences, which means even if the substance – let’s say alcohol -- is causing liver damage, you’re arrested for a DUI, or are fired from your job, you still take it. In fact, one of the major differences between chronic pain patients and addicts is that the opioids expand the life of the pain patient. They make things better — they improve the patient’s functioning and pain whereas with the addict, their life constricts and they become more and more focused on the drug that they are misusing. So you have the opposite effect, and that’s what I’m talking about when I say addicts continue to use it despite adverse consequences. Pain patients on prescribed opioids don’t have adverse consequences — they may have side effects from opioids but they don’t have these types of adverse consequences (eg, loss of a job, organ damage). The third element of addiction is the preoccupation or obsession with obtaining, using, and recovering from the effects of the drug.

Tolerance is the need for more to get the same effect. Tolerance is a big issue in prescribing opioids. Everyone knows that drug addicts have to keep increasing their dose to get a high. What most people don’t know is that tolerance to the different effects of opioids differs What I’m saying is there are generally four effects of opioids on the body. Three of them we call side effects and these are sedation, nausea and constipation. The fourth effect is the desired one -- pain relief. So opioids have four effects. It turns out that tolerance, meaning that you get less effect as you continue the same dose or that you need more medication to get the same effect, tolerance develops to two out of those four effects — sedation and nausea. Doctors realize you don’t develop much tolerance to constipation and that patients taking opioids have to be on a bowel program. But, what most doctors and patients do not realize is that you don’t develop much tolerance to the pain-relieving effects of opioids. What happens — when it comes to pain relief — is that most patients, once they’ve reached an effective dose, stay on the same dose for a long time. Sometimes they need a little upward increase but it’s not a significant thing. The usual reasons that a chronic pain patient needs a dose increase is either that they’re doing more physical activities, or that their disease has progressed.

So why is it that heroin addicts need more and more? The reason is because tolerance develops very, very quickly to the euphoria-producing effects of the drug. What causes a buzz from a drug is not the concentration in the blood stream. For example, you can have pain patients who have a little bit of the drug in their body and other pain patients who have a very high level in their blood in order to get pain relief, but neither of these people are likely to experience a buzz. What causes a buzz is the rate of increase — rate of change — in the brain. People develop a tolerance very rapidly to this. So anytime somebody says, “Isn’t true that people become tolerant to opioids?” the answer has got to be, “What do you mean by tolerance? What specific effect of the opioids are you asking about?” That’s a really important point. You don’t just develop tolerance or not develop tolerance. It’s a widespread misunderstanding.

 

[lucycherish]

i know how you feel, it took over ten years until i was diagnosed, it is a pain working up to the correct dose, just give it some time and be 'happy' you have finally been diagnosed and are heading down the right track now, and i also know how much of a pain in the ass it is waiting to start driving again! i was about to sit my practical test before i had my grand mal seizure and then it took a year to diagnose me (in which i couldnt drive) plus i had to be seizure free for a year so two years no driving and my theory had ran out by then too so had to start from scratch lol! Just keep ya chin up! x

 

[RobinN]

We took my daughter off all meds about 3+ yrs ago, because the side effects were not worth living with, and I have proof that they increased seizure activity.

We then began making nutritional changes, and did neurofeedback therapy. It wasn't a quick fix, but over time her seizure threshold has been raised. She has been seizure free for 10+ months. She had 6 tonic clonic seizures a month when on meds. I believe the quality of her life would have been quite low, had she remained on the medication.